Co-careldopa only -ve effects!

My partner is now on the top dosage of co-careldopa his sleep is very disrupted and his jerking is now in legs and arms every night. He has been advised to try melatonin too but that is not helping at all!
Are they any positives of these meds please I can see it is all getting him down he is getting irritable and fed up which I totally get!! :smiling_face_with_tear:

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That sounds really tough for both of you. Medication and sleep changes can be difficult to manage. It might help to speak with your partner’s Parkinson’s nurse or GP about possible adjustments. You can also talk to our helpline team on 0808 800 0303 or [email protected] for support. :blue_heart:

Parkinson’s UK Moderation Team

Good evening Loulou I am 71 & was diagnosed in June 2023 … I am also on
Co-careldopa, 2 pills x 3 times a day. I too have had extreme sleep issues, including restless leg, insomnia and horrific nightmares. I too tried Melatonin which did not work. Also a number of other drugs which did not work either.

I have seen 3 neurologists privately in the past 4 months. One an expert in sleep issues who put the blame on the Co-careldopa. The last neurologist took me off the
Co-careldopa for 2-3 months. I found my sleep was a lot better but my balance a lot worse and I had a number of falls.

So we trialed going back on Co-careldopa 2 pills at 7.30am and 2 pills at 1pm. But not taking the evening pills at all. This has really worked for me and I am sleeping much better and my balance is good.

You don’t say whether you get any benefit from taking the Co-careldopa.
I have tried other Parkinson’s drugs which did not work. I find Co-careldopa brilliant for me.

If he is tired because he does not sleep one can understand him being irritable.

Any questions please ask.

Best wishes
Steve2

Hi Loulou
I can empathise with your partner. I was diagnosed in 2021 aged 53. I was prescribed Co-Careldopa, small dose initially but over time, increased to pretty much the max dose. I had the same symptoms as you describe. Lack of sleep was killing me. I was put on dopamine agonists but most of them did not agree with me. Eventually, I started on Opicapone, one per night and an overnight drug called Caramet. This helped my lack of sleep but during the day I was suffering from Dyskinesia and what I believe to be Dystonia. I am now taking Amantadine for Dyskinesia.
I suspected for a while that since I started on the Opicapone that the Dyskinesia and Dystonia were being caused by effectively taking too much Co-Careldopa. So after speaking to my PD nurse and Consultant, we agreed a reduction in my Co-C dose by 12.5/50mg at a time. Eventually I was able to reduce it for 3 out of 5 of my daily dose times. Dare I say it; I feel ‘nearly’ normal again. I’m actually considering this small reduction in a fourth daily dose. I’ll speak with my PD Nurse first.
Have a chat with the PD medical team and don’t be afraid to suggest possible solutions.
Cheers
D

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What is the max dose of Co-careldopa/levdopa you refer to please? A couple of posts mention this. I was on just 4 of the 12.5/50mg per day in 2024. Now I’m on 13 and a half Sinemet slow release overnight. The target is to take the full 200/50mh Sinemet before bed. I’m better medicated than before, but it seems to interfere with bp and possibly the automatic nervous system that controls breathing, swallowing, blinking etc.

Hello @BDF, thank you for your question. Please reach out to your GP, specialist or Parkinson’s nurse if you’re having difficulties with your medication doses.

You might also find it helpful to read more about Levodopa, co-careldopa and Sinemet on our website: Levodopa (co-beneldopa and co-careldopa) | Parkinson's UK

We’re also here to help. Our free, confidential helpline is available to anyone affected by Parkinson’s. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses: 0808 800 0303 or email us at [email protected].

Take care :blue_heart:

Parkinson’s UK Moderation Team

That sounds really tough for both of you. Co-careldopa can help with movement during the day, but some people do get sleep issues and extra jerking at higher doses. If melatonin isn’t helping, it might be worth asking his Parkinson’s nurse or consultant about adjusting the timing or dose — sometimes small tweaks make a big difference. You’re definitely not alone in this.